Friday, July 5, 2013

Baxley family update 7/5/13

 Life has been crazy the last several months. I went back to college and worked as much as I possibly could. I also became involved with someone, but things didn’t work out. Kacie finished up dance and the 7th grade. She was also inducted into the National Junior Honor Society. Nick had a biopsy at the end of March, graduated high school, and started his first job.

I’m still in school this summer trying to finish filling “holes”, so I can start Athens State in August. I have been accepted into their School of Education as an Elementary Ed major.

Nick is working at Baumhower’s Wings. He got the position through Phoenix staffing which works in conjunction with Alabama Dept of Vocational Rehab. Nick really enjoys his position there. The work load is just enough right now.  He is also in the midst of being considered for disability through SSA due to all of his health problems. We have had to accept that Nick is rather limited on what he is able to do both physically and mentally. After much discussion with his doctors, this seems to be the most logical route for Nick. It’s not the path that Keith or I wanted for him, but if it enables Nick to live a satisfying life that has a high quality to’s what we’ll do.

The biopsy results from March took awhile to get finalized. The news isn’t the best. Nick still has active cancer. The lymph nodes that were biopsied showed that the Epstein Barr Virus is actually active and multiplying inside the nucleus of each cancer cell. What does this mean? Well, without getting rid of the virus, we can’t get rid of the cancer. There is no cure for the virus, so there is no cure for the cancer. The chemo is serving the purpose of keeping the cancer cells from multiplying, which means the cancer is staying in one spot. It’s not spreading.

We are in a place of very fine balance with Nick’s treatments. As long as the chemo can keep the cancer from spreading, everything is okay. If the cancer spreads, well...that’s something we will address if the time comes. The fact that the EBV is active inside these cancer cells means that Nick can’t ever stop taking chemo. The risk of not being able to get Nick stable again would be very high.

Nick’s kidney function has stabilized finally. The medication to protect his kidneys seems to be working very well. The kidney specialist has told us that Nick can go a year between checkups since the oncologist is monitoring the kidney functions in the blood work. This was good news.

Nick’s immune system is still pretty much nonexistent without the monthly boost of IVIG. The oncologist thinks that Nick probably needs to be reevaluated by the immunologist to make sure that Nick’s IVIG treatments are still on the right track.

Things with the FAP (genetic condition that caused Keith’s cancer that Nick also has) have been stable for the time being. As long as the disease process remains stable, Nick can go a year between scopes and tests.

I think that pretty much catches us up. I know there is a lot of information here. There are a lot of prayer requests and praises too! Thank you for continuing to lift us up in prayer.

We remain... In HIS Grip!